Building Your Team
Your team is a group of people you can call on as needed to help you meet the needs of your child’s progress. They are concerned about your child’s well-being, his/her best interests, development and medical needs.
Who should be my team leader?
Typically the parent is the primary team leader. As the parent, you are the main advocate for your child, and you are the expert on your child’s needs. However, if that is not possible, you should choose someone your family is comfortable with and who knows the range of issues your child may encounter, as well as the medical, educational, and general family needs for your situation.
How do I begin to build a team?
Start with a resource like Milestones. Educate yourself on the options available to you and the intervention methods you want to try. Contact the professionals you want to include and make appointments to meet with them, preferably with your child. You want your team to know your child personally, and they will want to assess your child for themselves. If your child is in school, ask to set up a meeting with all school professionals who may interact with your child.
How do I decide who I want on my team?
It is important that you are comfortable with discussing confidential issues about your child with each of the team members. Team members should:
- have a strong understanding of what is appropriate developmentally for your child in their specific field of expertise.
- be willing to refer you to the right people, should you need to expand your team.
- be willing to listen and learn, and not be defensive when you have a different opinion than they do.
Personalities may not always get along, but the most important thing is that everyone should be working towards what is best for your child.
Who might I want on the team with me?
There is a wide range of specialists who may be helpful to you and your child:
- Specialized therapists (behavior therapists; ABA therapist; speech, occupational and physical therapist; music)
- Primary physician
- Psychologist or psychiatrist
- Dietary specialists
- Behavior consultant
- Parent mentors
- Support organization representatives (like Milestones or the Cuyahoga County Board of Developmental Delays)
- Babysitters or respite providers
- Religious leader, family or close friends.
Members of your team will change through the years, as your child’s needs change or unforeseen situations occur (i.e. retirement).
What can the team do to help my child?
Your team can help guide you on your journey of raising a child with ASD. As they have different roles on your team, they can assist in a wide variety of areas, such as:
- Serving as a sounding board for any issues or problems your child may be having.
- Helping assess and develop plans for his more challenging behaviors.
- Evaluating the effectiveness of his medications including side effects.
- Being good listeners and offering you support.
- Providing respite for you.
- Helping you with day-to-day responsibilities or errands, so you can focus on your child.
- Recommending therapists, social groups, or activities for your child to participate in.
How often does our team need to meet?
Just as every child with ASD is different, every team serving a child will be different. Meeting as a group may not be necessary, for example, you may have a mini-team with a common goal that meets periodically (e.g. a school team). Or, you may determine that a regularly scheduled discussion may be imperative. Just keep in mind that scheduling may prove to be challenging, especially when involving medical experts. There will always be a period of trial and error, until you are able to figure out what works best for you.
How do I keep track of all of that information?
Having a child with ASD creates mounds of paperwork—it is important to stay organized and keep everything easily accessible. Creating a binder with all the information is a good way to make sure everything is in one place. It is also a good idea to have a section with your child’s general medical history, including any ER visits and other important medical information (allergies, asthma, food issues, etc.).
Always share current goals and behavior interventions with your team.
What happens if the team does not agree on something?
If your team disagrees on a treatment plan and you do not have control over the outcome (for example, while your child is in school), you do have some recourse to work towards a compromise. See Practical Tips for Parents — Preparing for the IEP Meeting.
If the team disagrees on another subject that is not school related, as the parent you have the final say on what is best for your child. Research as much as you can, speak to knowledgeable parent mentors and look to other resources whose opinions you trust before making a final decision.